more than 300 million people suffer from it worldwide

 Friday October 25, 2019

Scientists have estimated the number of people with rare diseases worldwide. AT worldwide, they represent 300 to 445 million.

 

About 4% of the world's population affected

These so-called rare diseases still represent the population of the United States. Indeed, researchers have managed to estimate the number of people worldwide affected by these diseases. The results published by French researchers from the National Institute of Health and Medical Research (Inserm), in the European Journal of Human Genetics indicate that 4% of the world's population would be affected.

This is the first time that researchers have been able to estimate the number of cases so accurately. To do this, they used data from Orphanet, a platform dating from 1997 created by the National Institute of Health and Medical Research (Inserm). To date, it is the world's largest database on rare diseases.

 

In France, 3 million people are affected

One of the researchers, Dr. Ana Rath, study coordinator and director of Orphanet said in Le Figaro that " It was important to do this work to have valid data to build on. Even if it is not perfect, it is the best estimate that we have at the moment ". Estimating the precise number of rare diseases in the world remains complicated, however, since many countries do not maintain national registers.

In France, there are no less than 3 million people affected by a rare disease. A disease is rare when it affects less than 1 in 2,000 people. These diseases are Duchenne muscular dystrophy, tuberculosis but also systemic scleroderma, polycythemia vera or Marfan syndrome. The researchers were also able to show that 149 of all rare diseases account for 80% of the cases listed worldwide. In addition, almost three quarters are of genetic origin.

 Stéphanie Haerts

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